Putting Your Team together- How many Specialists do you need and what to do if it's not possible to see Even One

[bkoffman]

I have talked and written extensively on the importance of having a CLL specialist on your team. We have even set up for, sadly only for USA patients at this time, free online consults with CLL specialists through our Expert Access program. We believe strongly in it. But not everyone has such expert access, so another option is to become experts ourselves. That's where services such as HU and the CLL Society help. It is possible though more challenging to get excellent care without a CLL guru on your team. You will need to be more assertive and more educated. As we say, smart patients get smart care.

And too many consults can not only be financially draining, they can be emotionally confusing. CLL doctors so often have different opinions and that can be hard to handle and sort out.

If you have a cardiac or renal issue, do pull in the appropriate specialist. Some CLL treatments such as CAR-T or transplants require expanding your team, but most don't.

Bottom line:

If you can see an expert, do it, sooner rather that later.

If you can't, become an expert yourself and rely on help here and elsewhere.

Avoid too many doctors for the same issue.

We have info on other aspects of putting your team together on our website in our Toolkit section.

Just my opinion. Find what works for you.

Stay strong

We are all in this together

Brian

[Newdawn Administrator]

Excellent advice Brian and a realistic recognition that not everyone has access to the same level of health care/expertise or even if it’s wise to confuse things with too many opinions on the same issue.

Many thanks for this input.

Newdawn

[amberhead]

I want to thank you for your Expert Access program. I utilized it myself a few weeks ago and after speaking with the CLL specialist it gave me the extra confidence I needed in my local Oncologist/Hematologist to go ahead and start treatment as they had recommended (the CLL specialist agree it was time to start and with the treatment plan my doctor recommended). It has really put me at ease with the decision and cannot tell you how much I enjoyed working with staff in the coordination of the consult!

[Hidden in reply to amberhead]

I signed up but never heard anything...I better check my spam email or something. I'd like to talk to a CLL specialist for sure at this point.

[Tommays56]

Well my first two specialist never did anything wrong but I am not at a point we’re there is much they could have

BUT while they had knowable of CLL I was not comfortable with the answers until I was able to be seen by Dr Rai and while I still don’t really like the answer at least I have 100% faith that his path for me is the correct one

[Hidden in reply to Tommays56]

Tommays

You are not alone, no one likes the answers doctors give. Don't blame them though, they can't really help it.

I never bothered seeing a specialist when Dx but I have started the process to get one on my team only because of the fatigue. It was so bad last week, worst I think it ever was that I simply need to go and ask for the sake of asking...even though I suspect they will not have answers....or not one's I like.

[Shepherd777]

I have not heard of the Expert Access Program. Please elaborate for me.

[gardening-girl in reply to Shepherd777]

CLL Society Expert Access™ Program

This program is available to patients living within the United States who have not had access to a CLL Expert. cllsociety.org/cll-society-...

[opal11uk]

Who are the top specialists for CLL in England and where are they located please?

[bkoffman CLL CURE Hero in reply to opal11uk]

Hi,

From our website, please see: cllsociety.org/toolbox/cll-...

Stay strong

Brian

[opal11uk]

Thank you x

[JigFettler Volunteer]

Aaahhhh... What you say is so true. And important. I agree. Here in UK we are lucky, I know. However our experts are rationed by time and being uber busy. Not all NHS consultants do private work.

I would be interested to learn more of your Expert Access Program. I confess to being medical and so have no issue being my own expert. I have the desire to set up a patient support program here in sunny SW UK once I am out of FCR treatment. To complement our excellent local services. WnW is real for us all, before treat, and between treatments.

I also wonder how this forum's incredible knowledge base could become searchable... if it is cld I be instructed how.

Than you for your wise words

Jig. In sunny UK.

[bkoffman CLL CURE Hero in reply to JigFettler]

At this time, the Expert Access is only open to those living in the US. We hope to expand.

[AussieNeil Partner Administrator in reply to JigFettler]

Site and community search are available at the top right of the screen on a computer and via your avatar at the top right on a mobile device.

Neil

[JigFettler Volunteer in reply to AussieNeil]

Hey! Thanks. Excellent. Jig.

[Jonquiljo]

I have a CLL specialist and local oncologist. I found that the CLL specialist was light years ahead of the oncologist, though the oncologist does handle a reasonable amount of CLL cases. The “specialist “ was also far more informative and realistic about expectations.

The CLL specialist wants to see me once a year unless problems develop. The oncologist wants to see me at 3 month intervals. I assume that I should keep seeing both. A lot can change in a year. Does that sound reasonable? Thx.

[MsLockYourPosts Passed Volunteer in reply to Jonquiljo]

It sounds like the way a lot of people deal with their care. Do your two doctors share information? For me that would be important. It means you are already in the system for a specialist should your situation change at some point, and have regular monitoring, so you know if something is changing, and so does your specialist.

[Jonquiljo in reply to MsLockYourPosts]

They don’t know about each other yet. I just sent saw the specialist about 10 days ago. If the oncologist has an ego, I need to get her used to this slowly. My problem is that I still don’t have a primary care Dr and need someone locally should CLL problems develop.

The oncologist was very much sugar coating my initial diagnosis -even before my FISH tests came in. Just common sense dicated that CLL would be worse than a head cold. The specialist talked to me like an intelligent adult and was not negative, but not sugar-coating the whole disease either. He was realistic.

To top that, the oncologist ordered flow cytometry, FISH tests, IgHV sequencing, and p53 sequencing - without getting prior authorization from the hospital blood lab that she is affiliated with. She didn’t even tell me that prior authorization was needed, nor did the blood lab. Now I am being stuck with a TON of bills that no one will pay.

At the time she ordered them, I didn’t even know what the tests were, so I couldn’t be proactive enough to call my insurance company and find out they needed authorization. Right after being diagnosed with CLL, most people are not about to get self protective about the system. Frankly I blame this on an oncologist who knew better but simply didn’t care. I gather that most of these procedures require (any) ins. Co. to authorize. Authorization would have taken a day and a few minutes of her assistant’s time. Now I will appeal, but will lose several thousand $ (close to $10K) simply because of a lazy oncologist. Its just a harbinger of things to come with this oncologist.

If I am fully insured, I can’t keep on paying a fortune out of pocket because the people involved cant bother to tell me protocol. I have to keep cash reserves intact for when big (and real) expenses do come. Sorry for digressing, but when we put together a team we need to know who on the team is really not helpful.

[MsLockYourPosts Passed Volunteer in reply to Jonquiljo]

I couldn't agree with you more. CLL taught me to be an aggressive patient when necessary, and to dump doctors in a heartbeat if they don't feel right for me. I put up with 5 years of doctors giving me a run around while I became increasingly ill - even had one tell me that I just wanted a cancer diagnosis, but he wasn't going to give it to me. Oops! It was the diagnosis.

I hope you can find someone else local! I think you indicated that San Francisco would be too far. If not, I will contact a long time CLL friend who lives there to ask who her local doctor is. She also sees Dr. Couture as her specialist.

I hope your appeal goes through. I spent hours, when first diagnosed, on the phone dealing with appeals. Patients should not have to work so hard to get good care!

[Jonquiljo in reply to MsLockYourPosts]

Mlyp: Thanks for the encouraging words. The vermin always descends when you are least able to deal with it. The system is really f@ked up, and I just have to accept that.

I learned to be an agressive SOB years ago. I grew up in a dyfuntional family raised by “mommie dearest.” I had to fight for whatever I wanted to do or have. Then I met the love of my life, she became disabled less than 12 years later. I have dealt with the scum of medical management for about 20 years now - protecting her.

I wason a “mission” today to fight the insurance co people and let them know what they would have to deal with if they pushed this any further. They were so imbecilic, that they had no clue of what the problem was. My wife heard me (half the neighborhood did) and came to my home office and calmly told me, “ Jon (thats me), please lighten up and just tell these people to go f@uck themselves.” As usual, she was right. I paused on the phoneband told the insurance company rep precisely that. This will not be the end of it as we have about $75K of my wifes claims outstanding since February.

That made me so made that I thought — stop worrying right now. If things get out of control - get an attorney and drag these people through the mud. We’ll probably lose more money by doing this. But I now have CLL and a lot of serious (not cancer related) problems that were uncovered when checking out my CLL. I have no one to treat them, but hey ... life’s never fun at times. My wife has has a serious orthopedic condtion for 20 years - and now our stupid government is taking everyone in chronic pain off of even the lowest doses of meds. We dont have time for these morons right now. My wife “N”, as usual was right - let them f@ck themselves and live to fight another day.

Right now isva time to try to live, not let the vermin gnaw at our bones. So yes, they can go to hell. I want to live our limited life and someone else can really drag these people through the mud. I’ve done it before in lots of situations - and vermin like this tend to back off at the first hint of trouble. You see they often make more money writing off bad claims than the do getting paid. They are also very scared of public opinion. Here, in California, we have lots of medical protection laws. An institution gets too many black marks against it and tgey getbsteep fines with censure. They don’t like that and run like the rats they are.

Thanks for your post, it made me feel not alone. Thats important to me. I owe you one!